PRO Intersex Resource

SUPPORTING YOUR INTERSEX CHILD Acknowledgements The work to create this resource was largely done on the traditional land of the Haudenosaunee, Anishinaabe, Huron-Wendat, and the Mississaugas of the Credit River. This land is part of the Dish With One Spoon Wampum Belt Covenant, an agreement between the Iroquios Confederacy and the Ojibwe and allied nations to peaceably share and care for the resources around the Great Lakes. We acknowledge that we are still impacted by the effects of colonization. Those impacts are seen through the way we understand gender, sex and bodies in the context of this work. This resource was produced by: Egale Canada Human Rights Trust Founded in 1995, Egale Canada Human Rights Trust (Egale) is the only national LGBTQI2S organization. Egale works to improve the lives of LGBTQI2S people in Canada and to enhance the global response to LGBTQI2S issues by informing public policy, inspiring cultural change, and promoting human rights and inclusion through research, education, and community engagement. Egale’s vision is a Canada, and ultimately a world without homophobia, biphobia, transphobia, and all other forms of oppression so that ever person can achieve their full potential, free from hatred and bias. This resource was put together with the consultation and gracious contributions of community members without whom, the making of this would not be possible. This work used funding from the Parents Reaching Out grant, funded by the Ontario Ministry of Education. (416) 964-7887 Egale Canada Human Rights Trust 185 Carlton Street, Toronto, Ontario, M5A 2K7 July, 2019 Contents Introduction 4 Navigating the healthcare system 6 Remember your rights! 8 Navigating conversations with your child 10 Navigating conversations with your family 11 Navigating the school system 12 Components of identity 13 Resources 15 Introduction There is a history of trauma and stigma in relation to intersex variations that stems from coercive, non-consensual surgical and pharmaceutical interventions. The lack of disclosure and autonomy given to intersex people is also a long standing issue. This resource was designed to answer common questions that parents of intersex children often have, while empowering parents and their children to make informed decisions based on current research from intersex activism. This resource for parents of intersex children includes general guidelines for navigating the healthcare system and navigating conversations with your child, your family, and with schools. Since being intersex is often confused with gender identity, we have included a handy guide to help parents understand this distinction themselves, and more easily explain it to others. A curated resource list is included at the end for further information. It is important to keep in mind that you and your child are partners embarking on this journey. An important part of your role is to preserve and support your child's autonomy while providing guidance and resources when needed. 4 Glossary Disorders of Sex Development (DSD) has been used by medical professionals to refer to intersex bodies. Some intersex people use these terms when referring to themselves. A growing number of intersex people consider DSD terminology to be stigmatizing and pathologizing and prefer to use the term intersex.2 Dyadic refers to a person whose chromosomal, hormonal, or anatomical sex characteristics fall within the conventional classifications of male or female. Using this term, instead of 'normal' female or male helps challenge social stigma by avoiding the implication that people with intersex variations are somehow less normal. Alternatively, some activists are pushing for the use of the term Endosex, which simply means not intersex. This push is to avoid endorsing any binary ideals that the term Dyadic linguistically suggests. While it is important to recognize that the binary is limiting and harmful, we will still be using the term Dyadic in this resource because the medical system, healthcare system, and society at large that you and your child must navigate within still operates between the confines of the binary. Intersex refers to a person whose chromosomal, hormonal or anatomical sex characteristics fall outside the conventional classifications of male or female. The designation of “intersex” can be experienced as stigmatizing. There is a history of medical practitioners imposing it as a diagnosis requiring correction, often through non- consensual surgery or drug treatments on infants, children and young adults (some people may not be identified as “intersex” until puberty or even later in life). The term is not an identity, but rather an umbrella term that encompasses a range of variations in biological sex differentiations. Sex/Gender Binary is the notion that there are only two possible sexes (male/female) and genders (man/woman), and that they are opposite, distinct and uniform categories. This view also asserts that gender is determined by sex. 5 Navigating the healthcare system If your child's intersex variation is identified at birth, you may be overwhelmed with an abundance of information that is difficult and confusing to understand. Here are some tips and facts that are important to remember and consider: Intersex variations occur within 1.7% of the population, similar to the percentage of children born with red hair.1 While this statistical comparison is centered on North American and Western populations, it still serves to show that you and your child are not alone. Medical staff may immediately suggest a 'treatment plan' that includes surgical procedures and/or hormonal treatments. Many of the recommended surgeries are 'normalizing' surgeries that aim to conform your child's body to stereotypical ideas about what bodies look like. Oftentimes they are not medically necessary and in fact can have harmful effects on your child's genitals and reproductive system. Unless an intervention is deemed medically necessary and supported with evidence, hold off on consenting to any surgeries or hormonal treatments until your child is old enough to participate in that decision. Many intersex people who have been subjected to non-consensual genital surgery as a child or infant come to regard it as a violation of 2 their bodies akin to sexual abuse later in their life. Doctors often make and/or recommend decisions about which sex to assign an intersex infant based largely on the ease of surgical intervention. For example, if they determine that an infant's penis is too small, they may suggest amputation and subsequently assign the child as female since it is easier to remove tissue than to add it. As a result of this, infants with ambiguous genitalia are more often assigned female than male. 6 Navigating the healthcare system Your child may need routine examinations and testing. It is important that you advocate for them while respecting their autonomy and their right to privacy as well. Ensure that your child knows about their rights as a patient, it is your job as a parent to prevent all potentially invasive or abusive approaches to intersex variations Empower your child to say no and allow them to express any experiences they may have felt uncomfortable with. There may be a time when your child wants to speak to medical professionals on their own in private - allow them that space. Involve your child in conversations about their health and medical decisions. Seek out and consult a range of professionals and community members who may have experienced similar medical situations as you and your child. Do your own research to learn more about the specific contexts of your child's intersex variation. Keep track of your child’s medical records for them. FACT Under the Canada Health Act, medical institutions have the power to withhold a patient’s medical record if they deem it to be in the 4 patient’s best interest. As a result, many intersex people have had trouble accessing their medical records as adults. As a parent, it therefore becomes more important for you to keep track of your child’s medical records for them. 7 Remember your rights! You and your child have the right to receive compassionate and considerate health care that takes into account your personal beliefs and values, and you and your child have the right to be included in the decision-making process free of coercion and pressure. You have the right to informed consent, which consists of: Access to information that is explained carefully and accessibly. The complete transparent set of medical information pertaining to your child and their intersex variation. An explanation of the risks and benefits of accepting or refusing any treatment or surgical procedure being offered to your child, including the state of research evidence related to the suggested treatment. You also have a right to know why your doctor or medical team thinks that treatment or surgery is justified. The right to refuse any treatments or surgical procedures that are not in the best interest of your child. FACT In Canada, the Criminal Code [s. 268(3)] allows for parents and medical practitioners to undertake non-consensual, cosmetic surgeries on intersex infants. 3 As such, there are no criminal repercussions to the pathologization and harm to intersex bodies which is in direct violation of the UN Convention Against Torture. There is currently a call to action to hold Canada accountable to international human rights law. 8 Remember your rights! You and your child have the right to privacy, which consists of: Full confidentiality in any communications of treatment, examinations and testing. The right to refuse any unnecessary examinations, and to be able to accompany your child during any necessary ones while being able to limit the presence of anyone not needed in attendance. The right to be informed if medical staff is looking into using your child as a participant in medical research.

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